Improving Enrollment

CHOP staff

“It can be challenging to locate and enroll new patients in registry studies,” notes Pam Weiss, Site PI for the Registry at CHOP. Pam has compiled a list of suggestions that have been effective for encouraging patient participation at CHOP. If the clinic has a welcome letter, consider adding a paragraph (not CARRA-specific) that lets the family know that staff may approach them about participating in research. Here is an example of a possible statement: Our institution is a teaching institution that focuses on excellent care. One way in which we strive to improve this care is through research. If your child is eligible to participate in a study, we may approach you at the time of your visit to participate. Please view this opportunity as a chance to help impact the treatment not only of your child but of many other children with the same condition. When the physician is discussing medication options with families, he/she may introduce the concept that one treatment algorithm may or may not be better than the other, and mention on-going studies for which the patient may be eligible. The Prezi for STOP-JIA is available to all! Please encourage site investigators and nurses to view it. Nurses are key! It is important to get nurses on board for the study; they provide critical support for enrollment.

Recruitment assistants (if your site has this role) can position themselves within earshot of the clinic nurse, so they are aware when the nurses are offering medication instruction. Ask nurses to alert the research assistants when doing med teaching.

Consider introducing the study and consenting in the time between when the physician leaves the room and the nurse comes in to teach. This approach minimizes the time it takes to fill out the study questionnaires, which pose a challenge for busy families.

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Patients and their caregivers are the focus of STOP-JIA. They make up a majority of the Stakeholder Advisory Panel, which oversees and gives feedback about the project and its materials. Members of the Stakeholder Advisory Panel also include a nurse, research...